17 October 2013: Questions to the Department of Children and Youth Affairs, for answer before the meeting of the Committee on Health and Children.

Question 17: Family participation in HSE reforms in disability services

Question 18: Emergency medical card procedures for terminally ill

Question 19: Paediatric hospitals integration

Question 17: Family participation in HSE reforms in disability services.

Can the Minister outline the Department of Health’s strategy and objectives in terms of family participation in the major strategic reforms currently being undertaken by the HSE in the area of disability services?

The HSE and the DOH acknowledge the importance of involving service users, parents & families and wider community in the planning organisation & delivery of services with people with a disability. In this context, the development of a partnership approach between all these stakeholders has been an important part of the model of service over many years. A range of both formal and informal processes are in place to give effect to this strategic objective.

At a national level, the National Consultative Forum (NCF) which was established by the HSE is the mechanism for bringing these key stakeholders together.
The forum includes representatives of the various umbrella bodies representing service providers e.g. Federation of Voluntary Bodies, The Disability Federation of Ireland (DFI), the Not for Profit Business Association, a number of bodies representing families or service users are involved e.g. Inclusion Ireland and National Parents and Siblings Alliance. The National Disability Authority is also represented as are the DOH & HSE.

Similar fora have been developed at regional and local level. In addition to the above, the development of many of the key strategic policy documents have included such representation e.g. the Report on Congregated Settings, New Directions the HSE’s policy document on the development of day services and the Policy on Progressing Disability Services for Children and Young People. As these strategic policies are being implemented, the HSE is ensuring that local implementation groups provide for the involvement of service users and/or parents & families as active participants.

The current process, for implementation of 0-18 Children’s Service model, as outlined below, is a good example of the processes being put in place to ensure full participation by service users, parents & family representatives.

Children’s Services Model:

• Membership of the National Coordinating Group includes Inclusion Ireland CEO and 2 parent representatives
• A subgroup on Communications was established to focus on improving communications with all stakeholders, including parents..
• The programme’s recent Local Implementation Group (LIG) Lead Workshop included a presentation by the Special Needs Parents Association representative on how to involve parents in the LIG from a parent perspective which was extremely very well received. Guidelines on Parent and Service User representation on Local Implementation Groups was developed with input from Special Needs Parents Association and Inclusion Ireland and shared with LIG Leads Subgroup on development Outcome Focused Performance Management Framework for Children and their Families” included a parent’s voice in the working group. Ongoing work being done at local level across the country to hold parent information/briefing sessions in order to inform parents of the proposed changes and to seek parental involvement on the local

Question 18: Emergency medical card procedures for terminally ill.

Can the HSE clarify the procedures in place in the event that an emergency medical card issued on the grounds of terminal illness (and therefore not subject to means test requirement) needs to be renewed after six months, to ensure that the renewal process will be on the same basis as the initial application – i.e. on the provision of evidence from the GP or hospital consultant of the terminal nature of the condition – and the applicant will not be asked to provide details of means?

The HSE can issue a medical card where a Doctor or a Consultant certifies that there is a terminal illness. Where a patient is terminally ill in palliative care, the nature of the terminal illness is not a deciding factor in the issue of a medical card in these circumstances and no means test applies. Given the nature and urgency of the issue, the HSE has appropriate escalation routes to ensure that the person gets the card as quickly as possible. The HSE monitors such cases and can renew the clients’ eligibility if necessary. In such circumstances there is no assessment of means.

Under the provisions of the Health Act 1970, the assessment for a medical card is determined primarily by reference to the means, including the income and expenditure, of the applicant and his or her partner and dependants.

While people with specific illnesses such as cancer are not automatically entitled to medical cards, the HSE can apply discretion and grant a medical card where a person’s income exceeds the income guidelines.

In these cases, social and medical issues are considered when determining whether or not undue financial hardship exists for the individual in accessing GP or other medical services. Discretion will be applied automatically during the processing of an application where additional information has been provided which can be considered by staff or a medical officer, where appropriate.

The HSE set up a clinical panel to assist in the processing of applications, where a person exceeds the income guidelines but there are difficult personal circumstances, such as an illness. The Medical Officer reviews and interprets medical information provided by the applicant on a confidential basis. He/she can liaise with general practitioners, hospital consultant and other health professionals as appropriate so as to determine the health needs of the applicant and his/her family and dependants.

It is important to stress that the medical card system is founded on the “undue hardship” test. The Health Act 1970 provides for medical cards on the basis of means. That is what the law states and we must operate within the legal parameters.

The HSE can also provide a medical card for patients in an emergency where they are seriously ill and in urgent need of medical care that they cannot afford.

Emergency medical cards are issued within 24 hours of receipt of the required patient details and letter of confirmation of condition from a doctor or consultant and are generally requested by a manager in a Local Health Office or a Social Worker.

Emergency cards are issued for six months on the basis that the patient is eligible for a medical card on the basis of means or undue financial hardship, and will follow up with a full application within a number of weeks of receiving the medical card.

The HSE ensures that the system responds to the variety of circumstances and complexities faced by individuals in these circumstances.

Question 19: Paediatric hospitals integration

With the Children’s Hospital Group Board appointed on 2 August 2013 to oversee the long overdue operational integration of the three existing paediatric hospitals in Dublin into a new children’s hospital, can the Minister provided us with an update on progress and the timeline for each phase?

The Children’s Hospital Group Board will oversee the operational integration of the three existing paediatric hospitals in advance of the move to the new hospital and is also the client for the new hospital. I appointed Dr Jim Browne as Chair of the Children’s Hospital Group Board last April. On 2 August I announced nine further appointments to the Children’s Hospital Group Board. The Chairs of the three paediatric hospitals are members of the Group Board. Other competency-based appointments have been made, with further competency-based appointments to be made at a later stage. The first meeting of the new Board took place on 2 October last.

On 13 September I announced that Ms. Eilísh Hardiman had been selected as CEO of the Children’s Hospital Group. This follows an open recruitment process led by the Public Appointments Service. The role of CEO of the Children’s Hospital Group is critically important in driving forward the integration of the three hospitals, and the project as a whole.

The Children’s Hospital Group Board will work closely with the National Paediatric Hospital Development Board on the capital project. The National Paediatric Hospital Development Board (NPHDB) is the body responsible for the design, building, planning and equipping of the new hospital building. Also on 2 August, I announced appointments to the NPHDB which will ensure that the necessary capital development skills are available to drive this priority project to completion, including the appointment of Mr Tom Costello as Chair. These appointments replace the transitional Board of officials from DOH and HSE who had been charged with progressing the project on an interim basis. The key post of Programme Director for National Paediatric Hospital Development Board was advertised on 4 October and will be recruited via open competition. The Programme Director will be the chief officer of the agency, will lead the project and will be responsible directly to the Board for the delivery of this priority project.

Work on developing a detailed project timeline is continuing and I expect to receive an update on this within the coming weeks. This will reflect the urgency and priority of the project and also its scale and complexity. The estimated programme will be kept under continuous review and validation by those to be charged with project delivery.

In the near term, the tender process for the procurement of a new design team is well underway, and the aim is to have the new design team in place by the end of 2013. Pre-application planning discussions have commenced and the aim is to secure planning permission by December 2014 with construction to commence in Spring 2015. A review of urgent care centre(s) configuration is almost complete; the number and location of these satellite centres in the Dublin area is a key decision, as the size, activity and infrastructure of these satellite centre(s) has implications for the main hospital brief. In parallel, St. James’s Hospital is working closely with HSE Estates and the National Paediatric Development Board in regard to the decant phase of the project.

The new children’s hospital is a priority for me and for this Government. Everyone involved in the drive to deliver the new children’s hospital capital project is working to do so by the earliest possible completion date. I am confident that the appointments made to the two Boards will ensure the new hospital is completed as swiftly as possible, with optimal design and value for money.

16 January 2014: Quarterly Meeting of the Joint Committee on Health and Children, the Minister for Health James Reilly TD and the HSE.

Question 9: Registered Nurse Prescribers

Question 10: Cardiac Rehabilitation Services

Question 11: Neuro-Rehabilitation Services

Question 9: Registered Nurse Prescribers

To ask the Minister for Health the reason for the HSE policy that Registered Nurse Prescribers who work in private healthcare facilities including nursing homes are not issued with prescription pads; if he would agree that this discriminates against qualified registered nurse prescribers working in private facilities and may impact on patient care by preventing timely symptom relief for residents with medical cards living in private and voluntary nursing homes where access to a GP may not be immediately available; and if he has plans to ask the HSE to change this?

Professional guidance is already in place with regard to scope of nursing and practice and specifically in relation to nurse/midwife medicinal product prescribing. Nurse/midwife medicinal product prescribing has been in place in Ireland since 2007 underpinned by (a) legislation, and (b) the NMBI regulatory framework. There are currently 650 registered nurse prescribers.

The issue in question is the requirement for access for nurse prescribers in private nursing homes to primary care prescription pads for the purposes of GMS reimbursement for medical card holders. This is a matter primarily for the HSE to determine.
The Department supports, in principle, nurse prescribers in private nursing homes having access to primary care prescription pads, subject to robust governance and accountability structures being put in place. The provision of nurse prescribing services in nursing homes would greatly enhance continuity of care from the hospital sector through to the nursing home sector. Medicines legislation currently in place does not differentiate between prescribing by nurse prescribers in public or private setting. Nor does it deal with reimbursement under the Community Drugs Schemes of prescriptions by nurses.
The issue of reimbursement through the Primary Care Reimbursement Service (PCRS) is a matter that will be progressed through engagement with the HSE by the Primary Care Division in this Department.

Question 10: Cardiac Rehabilitation Services

In light of Irish Heart Foundation and Irish Association for Cardiac Rehabilitation survey showing serious staffing deficits in cardiac rehabilitation services in all hospitals providing this service nationally, is the Minister concerned that these services cannot therefore maximise their life-saving and quality of life-saving capability

Rehabilitation is the phase following acute medical intervention, during which structured approaches to halt or slow progression of the underlying health condition are undertaken and where the patient is enabled to return to an optimal level of physical, psychological and social well-being. Rehabilitation goals focus on recovering lost function and reconditioning, reducing the risk of a recurrent event (secondary prevention) and optimising quality of life. To be effective, rehabilitation must start as soon as the patient is stabilised in the acute medical setting. Rehabilitative care should be integrated across acute, out-patient and community services, to include access to both intensive acute rehabilitation and long-term follow-up.

The development of cardiac rehabilitation services were accelerated under the National Cardiovascular Strategy and the Building Healthier Hearts (BHH) initiative from 2000 onwards. The BHH identified ten recommendations and three implementation measures for cardiac rehabilitation. These recommendations identified the need for a cardiac rehabilitation service in all hospitals that treat patients with heart disease, which would be multi-disciplinary, exercise based and involve family members. During the years 2000 to 2005, €72 million was invested for the development of cardiovascular services in line with the recommendations of Building Healthier Hearts.
The HSE is aware of the findings of the study by the Irish Heart Foundation and the Irish Association for Cardiac Rehabilitation. Cardiac rehabilitation is an important and significant part of the recovery process for patients who have experienced an ischemic event. As the report acknowledges, the number of patients attending cardiac rehabilitation services has significantly increased whilst demand for services has also continued to increase.

The report confirmed that following the expansion of cardiac rehabilitation services under the cardiovascular strategy, most services have many members of the clinical team in place. The report states:

• all services have a medical director in place
• all but two services have a designated rehab co-ordinator with 30 of the 34 services having a full time co-ordinator in place
• the majority of services have access to nursing and dietician services.
• requirement for further focus on integrating psychology services given the important and specialised role such professionals play in the rehabilitation process
• significant gaps in dedicated access to social work and occupational therapy services

It should be noted that where dedicated social work and occupational therapy services are not available to the cardiac rehab team, medical staff within hospitals have the ability to refer patients to the general social work and OT services of the hospital.
Although the report identifies staff cut backs as a significant service issue, the largest category of staff vacancies related to maternity and sick leave. In such cases, staffing returning from maternity or sick leave will resume providing services as part of the cardiac rehabilitation unit and therefore should not be considered a staff cutback. Similarly, the previously invested budget in cardiac rehabilitation services continues as part of the overall hospital budget. There have been no targeted reductions in cardiac rehabilitation budgets and hospitals will continue to manage this and all hospital services in line with their overall budget for 2014.

However, the report does highlight the need for further actions to ensure continuity of cardiac rehabilitation services where important clinical support services are not available for the reasons identified in the report (i.e. maternity leaves, retirements, transfer of staff, etc). Similarly, it is anticipated that demand for cardiac rehabilitation services will continue to grow requiring all units to be able to respond to increased levels of referrals in the future. The National Director of Acute Hospitals will further progress this area over 2014 utilising the findings from the report particularly focusing on required improvements in waiting lists, access to allied health professionals and levels of patient enrolment in programmes. The integration of pathways between cardiology services and referral to cardiac rehabilitation services is also another area which the HSE will focus on to ensure greater levels of access for patients requiring such service. As part of the reorganisation of services in the future, there will be opportunities to develop single site services into larger multi-site services which can share development opportunities and achieve greater economies of scale to the benefit of patients. As an example, the University of Limerick has its Clinical Operations Group currently working to develop a single clinically governed cardiac rehabilitation service that will be available and operate across the acute hospitals in its region.

In parallel, the HSE will also be expanding the range of services available to patients who experience ischemic events through initiatives implemented via the clinical programmes. For example, the National Clinical Programme for Heart Failure aims to reorganise the way heart failure (HF) patients are managed across the health service rolling out a co-ordinated, multi-disciplinary and patient focused disease management programme. The initial focus of this work has been on the creation of dedicated hospital centres where care and expertise in HF is concentrated. The programme also aims to develop appropriate support services for patients to be managed in the community and is currently working on a number of initiatives to advance this. To date structured heart failure services have been implemented in 11 sites under the HSE’s National Clinical Programme for Heart Failure.

Question 11: Neuro-Rehabilitation Services

What progress has been made on the development of the promised implementation plan in relation to the National Policy and Strategy for the provision of Neuro-Rehabilitation Services in Ireland 2011 – 2015?

The National Neuro-Rehabilitation Strategy made a number of recommendations for services for people with rehabilitation needs that covered a range of types of provision including: clinical, therapeutic, social , vocational and community supports.

Following development of the report, the HSE as part of it’s commitment to ensure the optimal care pathway for different Clinical needs, established the Rehabilitation Medicine Programme. The scope of the programme covers the whole of the patient journey from self management and prevention through to primary, secondary and tertiary care. These programmes provide a national, strategic, and coordinated approach to a wide range of clinical services and include the standardization of access to and delivery of, high quality, safe and efficient hospital services nationally as well as better linkages with primary care services. The RMP has almost completed the Model of Care for the provision of specialist rehabilitation services in Ireland which will be the basis for the delivery of services.
Outside of the Clinical Programme, the HSE Disability Services Division has a role in certain key aspects of Neuro-Rehabilitation Services, primarily the provision of community based therapy services, and personal social services, often funded through partner service providing agencies in the non statutory sector. The Disability Services Division is obliged to implement the recommendations of the Value for Money and Policy Review of Disability Services, and will use the recommendations of the VFM report, to focus on Disability funded rehabilitation services and enable reconfiguration of existing provision through the establishment of demonstration sites. Close links will be maintained with the Rehabilitation Medicine Clinical Programme to ensure that there is no duplication of effort and that all initiatives receive optimal support.

Demonstration sites have been identified by Disability Services and mapping has commenced.

The Rehabilitation Medicine Clinical Programme and the HSE Disability Services Division will jointly agree an implementation plan for the Neuro-rehabilitation Strategy, the first draft of which has been completed and is undergoing a process of refinement before finalisation.

16 January 2014: Quarterly Meeting of the Joint Committee on Health and Children, the Minister for Health James Reilly TD and the HSE.

Question 9: Registered Nurse Prescribers
Question 10: Cardiac Rehabilitation Services
Question 11: Neuro-Rehabilitation Services 

Question 9: Registered Nurse Prescribers

To ask the Minister for Health the reason for the HSE policy that Registered Nurse Prescribers who work in private healthcare facilities including nursing homes are not issued with prescription pads; if he would agree that this discriminates against qualified registered nurse prescribers working in private facilities and may impact on patient care by preventing timely symptom relief for residents with medical cards living in private and voluntary nursing homes where access to a GP may not be immediately available; and if he has plans to ask the HSE to change this? 

Professional guidance is already in place with regard to scope of nursing and practice and specifically in relation to nurse/midwife medicinal product prescribing.  Nurse/midwife medicinal product prescribing has been in place in Ireland since 2007 underpinned by (a) legislation, and (b) the NMBI regulatory framework. There are currently 650 registered nurse prescribers.

The issue in question is the requirement for access for nurse prescribers in private nursing homes to primary care prescription pads for the purposes of GMS reimbursement for medical card holders. This is a matter primarily for the HSE to determine.
The Department supports, in principle, nurse prescribers in private nursing homes having access to primary care prescription pads, subject to robust governance and accountability structures being put in place. The provision of nurse prescribing services in nursing homes would greatly enhance continuity of care from the hospital sector through to the nursing home sector. Medicines legislation currently in place does not differentiate between prescribing by nurse prescribers in public or private setting. Nor does it deal with reimbursement under the Community Drugs Schemes of prescriptions by nurses.
The issue of reimbursement through the Primary Care Reimbursement Service (PCRS) is a matter that will be progressed through engagement with the HSE by the Primary Care Division in this Department.

QUESTION 10: CARDIAC REHABILITATION SERVICES

In light of Irish Heart Foundation and Irish Association for Cardiac Rehabilitation survey showing serious staffing deficits in cardiac rehabilitation services in all hospitals providing this service nationally, is the Minister concerned that these services cannot therefore maximise their life-saving and quality of life-saving capability 

Rehabilitation is the phase following acute medical intervention, during which structured approaches to halt or slow progression of the underlying health condition are undertaken and where the patient is enabled to return to an optimal level of physical, psychological and social well-being. Rehabilitation goals focus on recovering lost function and reconditioning, reducing the risk of a recurrent event (secondary prevention) and optimising quality of life. To be effective, rehabilitation must start as soon as the patient is stabilised in the acute medical setting. Rehabilitative care should be integrated across acute, out-patient and community services, to include access to both intensive acute rehabilitation and long-term follow-up.

The development of cardiac rehabilitation services were accelerated under the National Cardiovascular Strategy and the Building Healthier Hearts (BHH) initiative from 2000 onwards. The BHH identified ten recommendations and three implementation measures for cardiac rehabilitation. These recommendations identified the need for a cardiac rehabilitation service in all hospitals that treat patients with heart disease, which would be multi-disciplinary, exercise based and involve family members. During the years 2000 to 2005, €72 million was invested for the development of cardiovascular services in line with the recommendations of Building Healthier Hearts.
The HSE is aware of the findings of the study by the Irish Heart Foundation and the Irish Association for Cardiac Rehabilitation. Cardiac rehabilitation is an important and significant part of the recovery process for patients who have experienced an ischemic event. As the report acknowledges, the number of patients attending cardiac rehabilitation services has significantly increased whilst demand for services has also continued to increase.

The report confirmed that following the expansion of cardiac rehabilitation services under the cardiovascular strategy, most services have many members of the clinical team in place. The report states:

· all services have a medical director in place
· all but two services have a designated rehab co-ordinator with 30 of the 34 services having a full time co-ordinator in place
· the majority of services have access to nursing and dietician services.
· requirement for further focus on integrating psychology services given the important and specialised role such professionals play in the rehabilitation process
· significant gaps in dedicated access to social work and occupational therapy services

It should be noted that where dedicated social work and occupational therapy services are not available to the cardiac rehab team, medical staff within hospitals have the ability to refer patients to the general social work and OT services of the hospital.
Although the report identifies staff cut backs as a significant service issue, the largest category of staff vacancies related to maternity and sick leave. In such cases, staffing returning from maternity or sick leave will resume providing services as part of the cardiac rehabilitation unit and therefore should not be considered a staff cutback. Similarly, the previously invested budget in cardiac rehabilitation services continues as part of the overall hospital budget. There have been no targeted reductions in cardiac rehabilitation budgets and hospitals will continue to manage this and all hospital services in line with their overall budget for 2014.

However, the report does highlight the need for further actions to ensure continuity of cardiac rehabilitation services where important clinical support services are not available for the reasons identified in the report (i.e. maternity leaves, retirements, transfer of staff, etc). Similarly, it is anticipated that demand for cardiac rehabilitation services will continue to grow requiring all units to be able to respond to increased levels of referrals in the future. The National Director of Acute Hospitals will further progress this area over 2014 utilising the findings from the report particularly focusing on required improvements in waiting lists, access to allied health professionals and levels of patient enrolment in programmes. The integration of pathways between cardiology services and referral to cardiac rehabilitation services is also another area which the HSE will focus on to ensure greater levels of access for patients requiring such service. As part of the reorganisation of services in the future, there will be opportunities to develop single site services into larger multi-site services which can share development opportunities and achieve greater economies of scale to the benefit of patients. As an example, the University of Limerick has its Clinical Operations Group currently working to develop a single clinically governed cardiac rehabilitation service that will be available and operate across the acute hospitals in its region.

In parallel, the HSE will also be expanding the range of services available to patients who experience ischemic events through initiatives implemented via the clinical programmes. For example, the National Clinical Programme for Heart Failure aims to reorganise the way heart failure (HF) patients are managed across the health service rolling out a co-ordinated, multi-disciplinary and patient focused disease management programme. The initial focus of this work has been on the creation of dedicated hospital centres where care and expertise in HF is concentrated. The programme also aims to develop appropriate support services for patients to be managed in the community and is currently working on a number of initiatives to advance this. To date structured heart failure services have been implemented in 11 sites under the HSE’s National Clinical Programme for Heart Failure.

Question 11: Neuro-Rehabilitation Services 

What progress has been made on the development of the promised implementation plan in relation to the National Policy and Strategy for the provision of Neuro-Rehabilitation Services in Ireland 2011 – 2015

The National Neuro-Rehabilitation Strategy made a number of recommendations for services for people with rehabilitation needs that covered a range of types of provision including: clinical, therapeutic, social , vocational and community supports.

Following development of the report, the HSE as part of it’s commitment to ensure the optimal care pathway for different Clinical needs, established the Rehabilitation Medicine Programme. The scope of the programme covers the whole of the patient journey from self management and prevention through to primary, secondary and tertiary care. These programmes provide a national, strategic, and coordinated approach to a wide range of clinical services and include the standardization of access to and delivery of, high quality, safe and efficient hospital services nationally as well as better linkages with primary care services. The RMP has almost completed the Model of Care for the provision of specialist rehabilitation services in Ireland which will be the basis for the delivery of services.
Outside of the Clinical Programme, the HSE Disability Services Division has a role in certain key aspects of Neuro-Rehabilitation Services, primarily the provision of community based therapy services, and personal social services, often funded through partner service providing agencies in the non statutory sector. The Disability Services Division is obliged to implement the recommendations of the Value for Money and Policy Review of Disability Services, and will use the recommendations of the VFM report, to focus on Disability funded rehabilitation services and enable reconfiguration of existing provision through the establishment of demonstration sites. Close links will be maintained with the Rehabilitation Medicine Clinical Programme to ensure that there is no duplication of effort and that all initiatives receive optimal support.

Demonstration sites have been identified by Disability Services and mapping has commenced.

The Rehabilitation Medicine Clinical Programme and the HSE Disability Services Division will jointly agree an implementation plan for the Neuro-rehabilitation Strategy, the first draft of which has been completed and is undergoing a process of refinement before finalisation.

Services for People with Disabilities – Motion

25th January 2012

I welcome John Dolan from the Disability Federation of Ireland, who is joining us tonight, as well as the aforementioned people. I would like to focus in my statement on what I believe are three fundamental failings in the provision of disability support services. One is that there are currently no independent inspections; the second is that the €1.5 billion of health budget that is spent on disability services is allocated to service providers rather than individuals; and the third is Ireland’s current capacity laws, which date back to 1871. Each of these is totally unacceptable and leads one to question what we have learned from our egregious failings towards vulnerable groups in State care in the past.

We can all agree that the only way to ensure we never repeat our past failings is to understand why they happened and for current and future policy to embrace what we learned. This is exactly what the recent Amnesty International report, In Plain Sight, responding to the Ferns, Ryan, Murphy and Cloyne reports, sought to achieve. Its aim was encapsulated by its executive director, Colm O’Gorman, when he said “The past only becomes history once we have addressed it, learnt from it and made the changes necessary to ensure that we do not repeat mistakes and wrongdoing.” In fact, the report identified a number of causal and contributory factors to the institutional abuse of children in State and church-run institutions, which unfortunately I see as being equally valid in today’s debate: the absence of a voice, the absence of statutory inspections, deference, and the failure of the State to operate on behalf of the people and not interest groups. While the debate we are having is in the context of disability supports and services, it is not really about disability – it is about justice, equality and human rights for all of our citizens.

With regard to the regulation and inspection of disability services, recommendation 11 of the Ryan report implementation plan states that independent inspections are essential. I will quote from the implementation plan, but I will take the liberty of substituting the word “children” with “people with disabilities”.
All services for [people with disabilities] should be subject to regular inspections in respect of all aspects of their care. The requirements of a system of inspection include the following:

– There is a sufficient number of inspectors.
– The inspectors must be independent.
– There should be objective national standards for inspection of all settings where [people with disabilities] are placed.
– Unannounced inspection should take place.
– Complaints to an inspector should be recorded and followed up.
– Inspectors should have power to ensure that inadequate standards are addressed without delay.

We are all aware of the commitment in the programme for Government, which we welcome, to put the draft national standards on a statutory footing. In fact, the second progress report on the Ryan report implementation plan, which was published last year, notes that a new target date of the fourth quarter of 2012 has been set. The report also notes that the commencement of the Health Act 2007 by the Department of Children and Youth Affairs to allow the independent registration and inspection of all residential centres and respite services for children with disabilities is contingent on the aforementioned action being taken. We still have not learned from our past and we still do not have the required systems in place. When will the Minister be in a position to give the necessary mandate and legal power to HIQA to inspect the centres?

In my research I was appalled to find that there has been no official audit of the number and location of centres, so we actually do not know where all the centres are and who is running them. I hope the Minister of State can show me evidence that this is not right. I also ask the Minister of State to explain why interim measures such as instructing the HSE and social services inspectorate to commence inspections of centres where children or those with disabilities live have not been put in place until an inspection regime is operational.
The second issue I want to discuss is the individual resource allocation system. Everyone agrees that we need to provide an individualised budget. We have spoken in the past about deference to the State and the church, but what about the deference that people in receipt of disability services are forced to pay to the HSE and service providers in circumstances in which they are unable to question or provide any input into the services they receive, where they receive them or who provides them? I have heard of cases in which an individual has chosen not to avail of a service, yet the State makes payments to the service provider, so the State is paying for a service that is not being accessed. It does not make sense. As the system currently operates, it seems that people with disabilities are expected to feel lucky and grateful for the supports and services they receive. The supports and services are provided by the State because we value all of our citizens. We recognise that we have different needs at different stages of our lives, and our system should reflect this.

We are all aware of and welcome the commitment in the programme for Government to introduce modern capacity legislation. I will not rehearse what has already been said, but I will give a quote from one of our briefings which clearly shows why the law is so archaic. Frieda Finlay, the chairperson of Inclusion Ireland, described the situation of herself and her daughter. She said: “As the parent of a 38 year old woman with an intellectual disability, who is a citizen by birth of an independent sovereign republic, I burn with anger every day at the thought that her capacity to make basic decisions about her life is governed by an Act signed into law by Queen Victoria and brought in by Gladstone’s Government 140 years ago.” The failure to repeal this law flies in the face of Ireland’s commitment to the right of all people in Ireland to live with dignity and exercise self-determination.

In conclusion, we all know what needs to be done. What we do not need is more reports; we do not even need more debates. We do not need pilot projects or think tanks. We need action and implementation. That is the reason for my disappointment that amendments have been tabled by both the Government and Sinn Féin. I urge my colleagues not to push them to a vote. The original motion that was tabled should be a catalyst for change. Let us show this to be a Seanad motion. It does not have to be an Independent Group motion. Let us collect around this motion and make it a Seanad motion, and let us show a strong sign of unity. That is what I urge my colleagues to do.

Order of Business, 25 January 2012

25th January 2012

I encourage my colleagues to participate in the Private Members’ debate on the motion proposed by the Independent group on disability support and services. I appeal to Members to support the motion as proposed. This is an important debate and I hope the House will support the very clear action points in the motion. It will be led by my colleague, Senator Mary Ann O’Brien.

I recall the Private Members’ motion by the Independent group on 12 October 2011 on criminalising the purchase of sex in Ireland. We are three months into the six-month period indicated by the Minister for Justice and Equality for public consultation. This matter was raised in the Dáil last week by Deputy Kevin Humphreys and the Minister advised that the consultation process would be ready before the end of January. However, I am concerned by the inclusion of a caveat in the Minister’s reply that the publication of the document before the end of January is subject to resources, having regard to compelling priorities including legislative priorities. I fully appreciate the financial times we are in and I know that the Government needs to prioritise its work. However, the debate we had on 12 October 2011 showed a clear link between prostitution and trafficking, particularly in respect of trafficking children for sexual exploitation. The protection of women and children from sexual exploitation must be a Government priority. I ask the Leader to invite the Minister for Justice and Equality to confirm that the consultation document will be published and that the consultation process will commence without further delay.

I also wish to raise whistleblower legislation. The situation of Louise Bayliss has been raised by the media in recent days. Coincidentally, she met me last Tuesday to discuss lone parents, before she heard the news. She is an advocate who has spoken out and we need to remember the five women she spoke out about, who were being put into a closed unit. How do we know how many other people are in that situation if we do not produce whistleblowing legislation? There should also be independent funding for advocacy organisations. This does not concern new funding but the basis of funding for the organisations working as advocates.

Finally, I wish to raise Children’s Rights Alliance report card launched on Monday. Last week, I called for the Minister for Children and Youth Affairs to come to the House and I suggest to the House that this is an excellent basis for discussion. The Government has failed in the report card in regard to St. Patrick’s institution and the continued detention of children in an adult prison regime. The effects of budget 2012 on lone parents and large families and the implications for child poverty were highlighted. The Government got the best grade any Government has received in four years but that does not mean it is good enough. We need to do more. It is a wide-ranging report which looks at all aspects of a child’s life and would provide an excellent foundation for a debate.

The Lancet

In July 2021, Jillian co-authored an article in the world-renowned medical journal “The Lancet”